We have just a few vials of blood available to test without having to poke A further. One of the tests we are trying to run is a research test through the University of Oklahoma and Dr. Madeline Cunningham. She is doing research on PANDAS. They are looking to measure the CaM Kinase in A’s blood. I believe everyone has this in their bodies, but the PANDAS kids will have a much higher number when tested. We would have liked to have sent 2 samples to them, but the Pneumococcal titers are much more important to us since the CaM Kinase can be drawn again 30 days after the IVIG. Here is an excerpt from Dr. Cunningham that provides and explanation of what a PANDAS child’s brain looks like when infected with PANDAS:
Madeleine wanted me to see the way our CaM Kinase and anti-neuronal antibody tests are run. I was able to look under a microscope at donor brain neurons. The donor neurons are kept in a little vial of fluid in a refrigerator. They are shaped a bit like a pentagon and on each end is a little curved “cupped hand” or small tendril.
She explained that when the neurons are healthy and happy, they cluster together gently and “hold hands” in nice, orderly groups.
When a PANDAS child’s blood is placed with these healthy neurons in a container – they begin to move rapidly in a very random fashion – and the “cupped hands” literally assault each other. There is disarray and confusion.
This disarray and confusion of movement is then measured by very expensive machines that use some type of radioactive light rays to physically measure the activity.
She wanted us to understand the following: the CaM Kinase and anti-neuronal numbers are tangible physical movements. It is a display of the potential disarray occurring in our children’s brain mentally, physically and emotionally. It was dramatic to see the “microcosm” of this illness.